Centuries from now, one of the things our era will be known for is the plague of dying badly. A growing number of physicians believe that one solution is helping their dying patients choose to end their lives. I disagree.
I’m proud of being a physician and a lifelong political progressive. I ardently believe in human rights. But there are some things doctors must not do. Intentionally ending patients’ lives is chief among them.
Read the counterpoint: I’m a doctor with end-stage cancer. I support medical aid in dying
Prolonged suffering before death emerged as a public health crisis in the mid-20th century. This first-world scourge, so persistent that few dare to imagine it can be eradicated, is a direct result of modern medicine’s original sin: believing that we can vanquish death. Given doctors’ success at saving lives threatened by severe injuries and infections, they presumed they could overmaster death. Yet despite the prowess of 21st-century medicine, my colleagues and I have yet to make a single person immortal. Instead, we have condemned countless incurably ill patients to needless anguish.
In bringing science to fight disease, the medical profession also brought hubris. Contrition is called for. But instead of owning up to our shortcomings, medical associations in several states have accepted what’s called medical aid in dying, becoming complicit in burying the results of our profession’s collective failings. That makes little sense from clinical, ethical, or social perspectives.
Professions exist to serve the public, not the other way around. Americans are rightly outraged by the mistreatment their dying loved ones commonly receive. People deserve state-of-art treatments for their maladies as well as expert attention to their comfort and inherent dignity all the way through to the end of life. Both are necessary; neither alone will suffice.
Dying badly is not inevitable. With current evidence-based, multimodal treatments, even the most severe pain associated with dying can be alleviated. Nature has given human beings gentle ways to leave this life when death draws near. In liver and kidney failure, the buildup of metabolic byproducts gradually sedates the dying person. With pneumonia, as with heart or respiratory failure, consciousness fades as the oxygen level and blood pressure fall. Some illnesses, such as cancer or dementia, eventually sap the appetite, causing individuals to dehydrate and peacefully slip away.
Under usual circumstances, doctors rightly act to swiftly treat dehydration, low blood pressure, and the chemical derangements of serious illness. Yet there comes a point in every life when more medical treatments do not equate to better care. In her book “Refuge,” Terry Tempest Williams relates her dying mother’s observation: “Terry, dying doesn’t cause suffering. Resistance to dying causes suffering.”
While physicians are the chief instigators, nearly everyone is complicit in overtreatment. Like the family described in this First Opinion, many of us insist on doing everything possible to preserve life. Our motives are noble. We love life and the people in our lives. We don’t want to die and we don’t want our parents, children, or siblings to die. Physicians don’t want their patients to die, either. Still, the unintended outcomes of our actions cannot be denied. In addition to causing unnecessary suffering at the end of life, witnessing the misery our treatments sometimes cause undoubtedly contributes to soaring rates within our profession of moral distress, burnout, depression, addiction, and suicide.
This is an unprecedented predicament. Throughout history, most public health crises were corrected through enhanced scientific knowledge and sophistication. Sanitation stemmed typhoid, cholera, and dysentery. Vaccinations prevented smallpox and polio. The crisis of dying badly in America may be an unforeseen consequence of sophistication, since it is most evident — and most extreme — in university-based referral centers.
Two recent reports from UCLA, one of our nation’s premier medical centers, illustrate the problem. In one study, researchers found that only 23 percent of incurably ill patients at UCLA’s cancer center were referred to hospice care before they died. To put this number in context, the American Society of Clinical Oncology considers referral to hospice a best practice for patients with advanced cancer. At UCLA, after embedding a palliative care nurse practitioner in selected clinics, 53 percent of patients were referred to hospice. While significant, this improvement falls short of Medicare’s national average of 60 percent of cancer patients who receive hospice care. Of note, that benefit only occurred at only two of UCLA’s 42 cancer clinics.
In a second study, investigators found that UCLA patients with cancer routinely received excessive radiation treatments to tumors that had spread to their bones. Of 54 patients who met criteria for single-dose treatment under clinical guidelines developed using the RAND/UCLA Appropriateness Methodology, only one patient was given the recommended one dose of radiation. Forty-two patients were prescribed 10 or more doses, which represents outdated, burdensome treatment regimens. Such overzealous treatment results in added revenue for doctors and the cancer center, but takes a disturbing toll on frail patients’ scant energy and fleeting time. There is little reason to believe the situation is much better at America’s other top medical centers.
From its inception, the profession of medicine has been charged with guiding society in matters related to health and wellbeing. Organized medicine should now be leading the charge for substantial improvements in caring for incurably ill patients. Instead, in several states the profession has begun to embrace physician-hastened death.
In December, as state “right-to-die” legislation was being debated, the Massachusetts Medical Society dropped its long-held opposition to physician-assisted suicide, adopting an oxymoronic position of neutral engagement. The California Medical Association approved a similar stance in June 2015, a decision that paved the way for passage of the state’s End-of-Life Option Act. State medical associations in Colorado, Vermont, and Maine have followed suit.
I am not the only doctor who recoils at the idea of writing prescriptions for patients to use in ending their lives. These days, however, many of my fellow physicians are too disengaged to feel strongly one way or the other, or simply can’t imagine how things could be different.
In today’s high-tech medicine, doctors treat disease. Patients’ well-being gets short shrift. When disease can no longer be kept at bay, modern medicine tends to give up altogether. If that sounds cynical, consider that in the wake of its own researchers uncovering serious systemic deficiencies in end-of-life care, UCLA actively moved to the forefront of institutions offering lethal prescriptions to eligible patients.
To its credit, the medical center’s protocol makes referral to palliative care and hospice a requirement for medical aid in dying. The cruel irony is that requesting a lethal prescription is now the surest way for UCLA patients to access the benefits of these specialized services at the most difficult times in their lives.
People who argue for the right to die invariably relate one or more stories of people they loved who died badly — tethered to machines in an intensive care unit or left to languish in a nursing home with their pain and emotional suffering ignored. It’s easy to understand how people in such situations would want to be freed from such anguish. Yet so much of that kind of suffering could have been avoided with good care.
Casting physician-hastened death as a freedom is disingenuous at best. If doctors don’t communicate with you about your condition and listen to your priorities, if they are unskilled in alleviating your pain, if medical bills are bankrupting your family, asking to die may be entirely rational. As the lyric goes, “Freedom’s just another word for nothing left to lose.”
I’m not expecting my profession to repent for its sins. I am, however, ever hopeful that doctors will once again rise to socially responsible leadership. We need to refocus on the fundamentals of human caring and recommit to caring well for people from birth all the way through to death. Here are some of the things that organized medicine could do to correct deficiencies that cause so many people to suffer needlessly at the ends of their lives:
- Draft public policies to fix longstanding flaws in clinical training and monitor members’ practices for quality indicators of excellent end-of-life care.
- Compel hospitals to institute robust palliative care programs.
- Champion regulatory reform to increase minimum staffing in nursing homes and rescind the licenses of facilities that repeatedly fail to meet their residents’ basic needs.
- Draft legislation to require Medicare and insurance companies to allow patients to receive hospice care while they are being treated for late-stage cancer or organ failure.
Physicians’ opinions will remain divided over the issue of pre-empting death. Those differences need not stop us from making it possible to care for our patients skillfully, with kindness and compassion, through the end of life.
Ira Byock, M.D., is a palliative care physician and chief medical officer of the Institute for Human Caring of Providence St. Joseph Health based in Torrance, Calif. His books include “Dying Well” and “The Best Care Possible.”
Re “Draft public policies to fix longstanding flaws in clinical training”
(1) More can be done, and faster, by adopting medical clinical guidelines that require adequate training. Public policy should then follow more easily.
(2) Good laws and good policies do not help unless they are enforced. Hospice quality standards are already high, but enforcement is lax to nonexistent. Same with home health nurse staffing standards–not enforced. I urge the policy spotlight should be on enforcement.
Re “regulatory reform to increase minimum staffing in nursing homes,” I would urge rather that the focus be on home health nurse staffing. Better for most patients, and generally more economical than warehousing patients in nursing facilities.
Very well-written, balanced and thoughtful article! You covered a lot of territory. I am dealing with end-of-life care with my mom, age 87. It’s a topic I was always interested in. But now I am there…I feel even more strong opinions about the medical systems currently operative. Many fall short. Some are innovators and finding better ways to assist patients & families. For the caretaker…I advise seeking professional eldercare attorney help. And consulting trusted friends/family who are already coping with issues you are facing. Caregiver burnout is more real than ever. I seriously worry I will die from the stress of lifting, bathing, diaper changing my loved one. There are “answers,” but not everyone has access to the appropriate items/options that prevent caregiver issues in a timely fashion. I keep reaching out but I need bodies to takeover my vigil…plain & simple. To be able to sleep.
Better healthcare to me means that caregivers help sculpt new plans of intervention that don’t require jumping through quite so many hoops.
I guess I will try to be the voice of reason here. As illustrated by your article you point out that this problem is primarily a first world issue due to the artificially prolonged lifespan of people. Your chief response to your perceived problem is “let’s make healthcare industry better” admirable idea. But what about me and my choices? If the right to self-determination means anything it is the right for me to chose not only how I live but how I die. If I find myself with a terminal disease in a late stage where my day to day experience is defined by how numbed out I am to the pain, I believe I have the right to end my own life. And here comes the question, will you make this easy for me or will you make it hard? Hard would constitute an illegal activity that my family would be liable for helping with not to mention the possibility of botching it and causing more pain for me and my family. Easy would be if I could ask my doctor to write me a prescription that will surely and safely alleviate my pain and my families responsibility. It’s my choice, you are there just to write the name of the pills I need on a piece of paper. I’m sorry you find this so difficult, perhaps you need an easier profession. But if you won’t does your job you are only leaving it to me to improvise. Which is really the best option here?
Hello Ivan, You put it so well…..At the moment, as happened to my husband Andrew when we went to Switzerland and Dignitas, all the Dr had to do was write the prescription. When he met Andrew and assessed him, he could see that Andrew was never going to get better, he was fading fast and as a highly intelligent man of 70, he’d had enough of pain and suffering. The Dr gives the prescription to the wonderful Dignitas people. They got the barbiturate from the equally wonderful pharmacist (seems to be only one place that will supply it in Zurich apparently) and then the Dignitas people attended while my husband drank the medication by himself. As you say is that really so onerous for a medic to do? Write out a prescription? And Andrew’s life ended in a good way. He was still the man he always wanted to stay and not end up under the control of hospitals and medical interventions that were never going to work…but just cause more side effects and suffering. I am totally bemused and angry at this intransigent by so many in the medical establishment who seem, all too often, to claim to know ‘best’, when they patently don’t.
Doctors need to start abiding by the Hippocratic Oath they took before becoming Doctor’s. They are “Supposed” to be saving lives, not murdering patients. Patients who REFUSE Hospice/Palliative care, but are unknowingly being forced into it. The patient nor the family ever consulted and consent forms never signed. All kept a big secret and the patient never treated for anything, but instead overdosed with Morphine by these Doctors of death. Never told who these death mongers are. And then Medicare pays for ILLEGAL Hospice/Palliative Care?????
Since The euthanasia monopoly, judges, politicians, philanthropists, utilitarians, Unitarians and Darwinist want to kill people they should do it themselves and leave the mutual respect between us and our doctors/nurses alone. Resisting saves lives everyday. MTaas org
And the words saying and at home meant really are very offputting to someone in things are religions imaginary inventions, I generally paternalistic men.
Whike I agree that palliative cate should be made available much earlier, along with better communication and subsidized csre, I find the author’s alternatives themselves to be ‘disingenuous’, insufficient, and frankly offensive.
I agree physicians should not end a patient’s life. However I believe in the right of a patient to end their own life. In order to do that painlessly, it is best done with something the patient needs the prescriber’s help to acquire.
Of course, they can go onto the streets and get it without the physician’s assistance, but is that really what we want them to have to do?
If the patient decides to end their life and is lucid and reasoned, for a physician not to accede to that request is unethical, not the other way around.
You overlook one huge problem. By the time many patients reach the EOL stage, they are too frail and immobile to obtain, much less administer, street opioids. I see no ethical nobility is requiring patients or family members to engage in criminal behavior that is perfectly legal when physician or other medical professional does it.
Claims by some physicians that assisted end of life (EOL) violates their Hippocratic oath merely evinces hypocrisy – often based upon ethical belief systems that post-date Hippocrates. Yes, Hippocrates opposed assisting suicide – but suicide is the irrational act of a mentally-ill person, and we can treat that. Alternatively, most people who request EOL are rational but whose physical state deprives them of music, literature, art, socialization, and mobility; but not necessarily chronic pain.
“Dear Apollo, God, Allah, whomever; I have decided to adhere to the Hippocratic oath except when it looks like the patient is going to die anyway (from the illnesses listed on attachment 1). Then I will help them end their suffering with an opioid overdose.”
That is what I mean by hypocrisy.
Yes you may like the concept of assisted suicide/euthanasia but the administration of the non-transparent laws in OR, WA, CA and CO brightly provide immunity for predators (corporations, strangers, caregivers, heirs, guardians…) to complete the killing all before the family knows. The safeguards are hollow and unenforceable .A simple reading of the laws confirms this to be true. I am not for that. Are you?? For more investigative reports mtaas org. Resisting saves lives everyday.
Terminology is very important in EOL discussions. First, as I mentioned, assisted suicide is both criminal and unethical because suicide is a symptom of a treatable disease. Second, euthanasia is a term with a long history of pejorative applications. In the last century, some political regimes called murdering developmentally disabled children “euthanasia.” Though it does imply end-of-suffering by ending life, it is more often used today in the context of putting away an injured pet or livestock. As for poorly written laws, that is a weak excuse for withholding EOL services. A law can be emended.
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